“My stomach hurts,” I complained to my then-boyfriend back in 2010.
“Do you realize that you’ve never gone a day that we’ve dated without having a stomachache?” he asked, a little incredulous.
Up until that point, I actually hadn’t noticed — in fact, pain had become such a consistent part of my day-to-day existence that I didn’t keep track of it. My arms, feet, lower back, and chest all regularly felt deep throbbing, squeezing, or shooting pains. My hips often felt like they were moving backwards as the rest of my body moved forward, and I frequently lost my balance thanks to dizziness and muscle pain.
Soon after he pointed this out, I spent an afternoon tracking all of my pain in a Word doc. When I started paying attention, I realized just how constant it was. Prior to that day, I was aware that I was often ill, sore, or exhausted, but I’d always blamed it on not sleeping or exercising enough, therefore consistently talking myself out of actually seeking help as an adult. This, compounded with my negative experiences with doctors during my teen years, resulted in totally ignoring symptoms that others might have seen as giant red flags.
Allow me to back up for a moment: I hate going to the doctor so much that I will do just about anything in my power to avoid going, unless it’s an emergency or I need new contact lenses. I attribute this intense aversion to two things: being misdiagnosed with bipolar disorder and over-medicated at 12-years-old (a story for another day); but even moreso, I credit it to seeing nearly a dozen doctors as my parents and I attempted to figure out the cause of a frequent chest pain I experienced throughout high school.
Even though I was waking up every few days feeling like someone was simultaneously twisting my diaphragm and sitting on my chest, no one could deliver an answer. Specialist after specialist looked at me and couldn’t discern anything concretely wrong with my body, so they often operated under the assumption that I was either making it up or imagining it. This not only makes people with chronic debilitating pain feel frustrated, anxious, and unheard; it also makes us scared to seek treatment. It’s like calling 911 because your kitchen is on fire, but then the firefighters tell you there’s nothing wrong because they can’t see flames from outside the house.
I eventually gave up trying to find an answer and just resigned myself to not knowing. This isn’t an uncommon experience among people who have been repeatedly deterred by unconvinced doctors.
Flash forward to my college years when I finally decided to track all my pain that afternoon.
While I still felt averse to doctors, I was significantly more determined to both find an answer and to advocate for myself. I saw a rheumatologist who tested me for Lyme disease, rheumatoid arthritis, lupus, and several other illnesses, all of which came back negative. But rather than dismiss my pain as feigned or imagined, this doctor believed me when I insisted on how I was feeling. She analyzed my symptoms and, having eliminated the aforementioned possibilities, drew a conclusion.
Finally, after years of searching in vain for an answer, my doctor diagnosed me with fibromyalgia, a “chronic disorder characterized by widespread pain, diffuse tenderness, and a number of other symptoms,” according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Its causes aren’t clear, though it’s worth noting some doctors associate it with traumatic events as well as a person’s genetics. But at least I finally had a name for it — and that meant I could look for potential treatments.
Still, while I have a diagnosis and certain measures I take that help with my fibro, it doesn’t change how debilitating it can sometimes still be. This compounded with my clinical depression, lifelong obsessive-compulsive disorder, and bulimia makes for a whole lot of cancelled plans and missed work.
There are still days where my chest feels like it’s being stepped on, where my entire body feels like it’s covered in ice water. For at least three weeks in 2016, I felt like my arms were on pins and needles the way your limbs get if they lose circulation. I get sick if there’s too much pressure on my midsection, I throw up after sex once in awhile, and I have heightened temperature sensitivity so I shake or sweat a lot. (I know, I know — I’m really selling myself as boatloads of fun here!) And because I still look as able-bodied and average-sized as I did when all the doctors in high school dismissed my ailments, many people make inferences about my motivations and competence.
When you don’t seem sick in the conventional ways people associate with injury or illness — crutches, a sling, a stuffy nose — it can be very difficult to have your limitations respected and your pain acknowledged. This is one of the main reasons mental illness is so easy to dismiss: it’s essentially invisible (though anyone with depression who literally cannot get out of bed some days knows that appearances mean nothing).
For those with fibromyalgia or any other illness that people can’t immediately see just by looking at you, being unable to complete certain tasks or maintain a “healthy” lifestyle is often met with skepticism and scrutiny. People often assume you’re just lazy or irresponsible, even if it takes you the same amount of physical and emotional energy to leave the house as it takes other folks to run a mile.
Of course, we are all guilty of making inaccurate judgments towards others based on appearances. But for doctors, employers, and loved ones to do this to a person who’s suffering from a serious chronic medical condition, it can be hurtful and even unsafe. If a person feels like their experiences are disregarded by those around them, they may be less likely to take steps to getting better.
If one of your loved ones (or even just a coworker or acquaintance) says they’re hurting, whether it’s mental or physical, believe them — it not only can help validate their experiences and suffering, it can also compel them to seek necessary treatments, should they have been reluctant up until that point.
And if it’s you who’s in pain, please know this: you deserve to be believed and acknowledged. You are entitled to compassion and understanding from those around you. Whenever possible, advocate for yourself and trust your instincts if you think something is wrong.
It’s not all in your head.
